Clinical Training Recommendations for Occupational Therapy Practitioners Caring for Patients with Serious Illness

These training recommendations will help occupational therapy practitioners address the unique needs of patients living with serious illness.

Assess the Needs and Concerns of Patients

• Assess the impact of serious illness on patient and caregivers’ quality of life, well-being, participation in daily life, and meaningful activities (e.g. cognition and visual perception skills, fatigue and pain management, and environmental constraints and necessary adaptation.
• Assess patient’s physical, mental, social, cultural, and spiritual well-being at all stages of disease and use appropriate assessment tools specific to rehabilitation.
• Identify the impact of medical treatments and medications on function, alertness, self-monitoring skills, and awareness of self and safety.
• Assess patient for durable medical and/or adaptive equipment needs.
• Review caregiver needs (physical, psychosocial), resiliency, and resources.
• Know what palliative care is, and how and when to request a consult.

Strengthen the Clinician-Patient Relationship and Understand Goals of Care

• Identify the social supports as they relate to care for the patient and how they may participate in meaningful activities.
• Facilitate conversation with patients to understand what matters most to them now that they have a diagnosis of a serious illness; participate in shared decision-making that is aligned with patients’ values and preferences to create an OT care plan to reflect these goals.
  • May include desired location for future care (e.g. home vs. extended care facility)
• Support patients and caregivers in prioritizing and problem-solving barriers to participation in daily life and meaningful activities, as well as enhancing safety in- and outside the home.
• Identify how culture, race, gender, sexual orientation, and context (e.g., social determinants of health) influence patient and family decision-making in the context of a serious illness, and deliver responsive, unbiased care matched to needs and priorities.
• Educate clinical colleagues on the role of occupational therapy in palliative care and when consults are appropriate.

Manage Pain and Symptoms

• Assess the impact of medications on balance, bodily functions, alertness, self-monitoring skills, and awareness of self and safety.
• Assess patient for durable medical and/or adaptive equipment needs to facilitate safety (both of patient and caregivers), participation in daily life, and decreased caregiver burden.
• Assess the impact of common symptoms associated with serious illness on safety, function, and participation in daily life (e.g., impact of severe pain on ability to participate in daily life and meaningful activities), and alert team members about:
  • Pain
  • Nausea and vomiting
  • Constipation and diarrhea
  • Dyspnea
  • Fatigue
  • Depression
  • Anxiety
  • Delirium, agitation
  • Balance/dizziness (especially regarding positional changes)
  • Safety risks
  • Cognition (e.g., attention to task)
  • Benefits and risks associated with assistive devices, bed rails, commodes, and environmental modifications
  • Caregiver needs and/or concerns
• Utilize non-pharmacological strategies for managing pain, fatigue, and psychosocial symptoms (e.g., mindfulness-based interventions, managing pain medication schedule).
• Identify and assess the feasibility, acceptability, and safety of the care plan with the patient (e.g., determining appropriate home modifications), including discharge planning and level of care.
• Use principles of trauma-informed care, specifically in the context of serious illness (e.g. cancer-related post-traumatic stress).

Prevent Crises and Plan Ahead

• Collaborate in discharge planning and level of care.
• Identify sources of distress related to decreased in participation in activities that matter (physical, psychosocial, spiritual) and collaborate with colleagues to provide support when needed.
• Provide patient and caregiver education in:
  • Patient transfers (body mechanics)
  • Self-care
  • Communicating needs to care team
  • Safety, including safe use of assistive devices a bed rails, commodes, and environmental modifications and their benefits and burdens
  • Daily schedule management
  • Planning for possible patient decline and increased caregiving needs (e.g., procuring drop-arm commode before need arises)
• Assess patient’s environments (e.g., home, community, social, cultural) and provide recommendations that are appropriate, feasible, and anticipatory.

Complete the Learning Pathway, Foundational Skills for All Occupational Therapists, to acquire these skills.

Assess the Needs and Concerns of Patients

• Determine patient and/or caregivers’ level of knowledge about their illness and refer to primary team for additional information when appropriate.
• Assess for distress related to function, safety, and participation in daily life; invite dialog on these issues and alert appropriate team members.
• Use appropriate assessment tools relevant to palliative care.
• Assess for common factors affecting safety, function, and participation in daily activities that may be complicated by serious illness, and collaborate with the treating team for effective management, including:
  • Social risk factors:
    • Presence and capacity of caregiver
    • Caregiver burden and support
    • Racism and other cultural factors that influence care
    • Access to housing, food, and transportation
    • Financial security or strain (e.g., ability to pay for equipment or environmental modifications)
  • Polypharmacy and its impact on function
  • Emotional, social, psychological, cultural, and spiritual sources of distress (e.g., existential distress)
  • Physical symptom distress (e.g., pain, dyspnea, dizziness, etc.
  • Communication barriers (e.g., vision, hearing, dental issues, health literacy)

Strengthen the Clinician-Patient Relationship and Understand Goals of Care

• Review goals of care conversations and be confident and competent to provide goal-concordant occupational therapy.
• Assess for, and be responsive to, individual or cultural practices related to serious illness and end of life.
• Attend to various post-acute care options, including both home health and hospice, and provide recommendations on necessary medical equipment.
• Conduct skilled conversations with patients and families about:
  • Serious news (e.g., discussing driving cessation in response to cognitive and functional changes)
  • Prognosis (changes in function, participation in daily life, and level of care needed)
  • Anticipated functional decline and strategies for maintaining autonomy
  • Patient/family expectations (future needs for equipment or support)
  • Financial strain
• Provide education about:
  • Coping with serious illness and its impact on participation in daily life and function
  • ADLs
  • Safety (e.g., transfers)
  • Non-pharmacological strategies for managing pain and anxiety
  • Adaptations to daily life and meaningful activities, including gradation of activity to facilitate participation
  • Environmental modifications (home set up for safety and independence)

Manage Pain and Symptoms

• Educate patients and caregivers on the often-fluctuating nature of pain and symptoms and functional performance across the illness trajectory, including preparation for safe functional participation when fluctuations occur.
• Contextualize treatment and/or interventions to incorporate the values, meaning, and priorities of each individual patient to provide person-centered, family-focused, and culturally congruent care.
  • Know side effects of current and future pain medications and plan accordingly
  • Employ mindfulness-based strategies and tools to address pain and symptoms
  • Use principles of trauma-informed care, specifically in the context of serious illness (e.g., cancer-related post-traumatic stress)
• Advocate for the increase of palliative care services for underserved or marginalized populations.

Prevent Crises and Plan Ahead

• Identify barriers to meeting needs of patient, family, and caregivers and honoring their priorities, and discuss the least restrictive alternatives (e.g., discuss risks/benefits of a family beach outing and assist in planning).
• Develop a proactive assessment and plan, in the event of falls, changes in functional ability (e.g., physical, cognitive), and compromised ability to participate in daily life and/or meaningful activities.
• Educate patients and caregivers on the often-fluctuating nature of symptoms and functional performance including preparation for safe ADL and functional participation when fluctuations occur.
• Assess caregiver’s ability to provide continued care; discuss necessary transitions of care if warranted.
• Facilitate legacy building and social connections regarding closure (letter-writing, gifts to loved ones, etc.).
• Facilitate in conversations with patients and families about what to expect in the future (“rehab in reverse”/decline with dignity.

Thank you to the following clinicians for their review of these recommendations: Ann Henshaw, OTD, MPH, MBA, OTR/L; Emily Vandekieft ,OTD, OTR/L